Controversial cancer treatment to begin today

Tuesday

Jun 24, 2014 at 3:15 AMJun 24, 2014 at 10:53 AM

By Dylan Morrilldmorrill@fosters.com

ROCHESTER — The 12-year-old Hudson girl whose family successfully petitioned the FDA this year for access to a controversial cancer treatment is scheduled to receive her first dose today at Dr. Terry Bennett's Quick Care Clinic in Rochester.

McKenzie Lowe's antineoplaston therapy treatment regimen will begin at the Quick Care Clinic and after a few days it will move to Hudson where McKenzie will be cared for by Registered Nurse Ariel Dye at McKenzie's home, according to Bennett. McKenzie was at the Quick Care Clinic on Monday but did not start the therapy due to a complication with needle sizes, according to the Lowe family.

McKenzie was diagnosed in November 2012 with a highly aggressive and inoperable brain stem tumor called Diffuse Intrinsic Pontine Glioma (DIPG). Patients with DIPG typically survive less-than a year.

McKenzie underwent chemotherapy and more than 40 rounds of radiation in 2013, but the treatments were making her sick and tired. Seeking an alternative, the Lowe family learned about Dr. Stanislaw Burzynski, 71, and his controversial antineoplaston therapy treatment.

Burzynski's developed the treatment, which the Lowe's believe has a higher cure rate with less side effects than traditional treatment, and sought it out for McKenzie.

But antineoplaston therapy has never gained FDA approval, and Burzynski himself has maintained a tumultuous relationship with the agency, including two federal trials for criminal contempt, mail fraud and violation of federal laws.

He was not found guilty in both trials, but Burzynski's relationship with the FDA continued to be adversarial. In 2012, the agency banned antineoplaton therapy following the death of a six-year-old patient.

Burzynski has his supporters. There are several anecdotal accounts of his treatments prolonging and saving lives. The Lowe family, swayed by such accounts, lobbied the FDA for four months to get permission for McKenzie to get antineoplaston therapy.

Finally, in March the FDA granted McKenzie a compassionate use exemption under the condition that a doctor other than Burzynski oversee the treatment.

Nearly two months later, Bennett and his employees spent more-than 100 hours filling out the FDA application to become the sponsoring doctor and perform the therapy using Burzynksi's medicines.

Dye was then contacted through “a friend of a friend of a friend,” and decided to offer her nursing services for free to McKenzie. She took two trips down to Burzynski's Houston clinic to learn about the therapy.

Both Dye and Bennett are not charging for their services, and they thought that Burzynski would also be working pro bono. In December, 2013, Burzynski wrote a letter to U.S. Sen. Kelly Ayotte's legislative assistant Dan Auger explaining that he would provide antineoplaston therapy for free if the FDA granted the exemption.

The letter read: “This is to confirm S.R. Burzynski, manufacturer of Antineoplaston A10 and As2-1 infusions is willing to provide these agents for free and for compassionate means.”

Bennett said he was told in May during a phone conversation with Burzynski that the medicine was being donated. It was after that conversation that Bennett decided to sponsor McKenzie.

The Lowe family also believed that McKenzie's medicine was being provided for free. But Dianne Lowe, McKenzie's mother, said she received an itemized bill from Burzynski showed up in her mail a few weeks ago.

The family was told that the first month will cost $28,000 and every month after that will cost $16,000.

“It meets all the criteria for a bait and switch operation,” said Bennett.

Still, Bennett and the Lowe family are still hopeful that the therapy will have a positive effect.

McKenzie will be administered the therapy for 20 hours a day for six to eight weeks at which point Dye and Bennett will evaluate the progress.

The therapy will be given through injection. She will wear a backpack that will carry around the bag of the liquid antineoplastons.

Antineoplaston therapy last for an average of 12 months, but in some cases it last for much longer.

The Lowe family has started a GoFundMe.org (GoFundMe.com/9a4geo) account, which raised over $6,000 as of June 23. And they set up an account with the Digital Federal Credit Union in Hudson that also has been taking donations.

A fundraiser will take place today at Kendall Pond Pizza from 5 to 8 p.m. And on July 12, a silent auction and raffle fundraiser will take place at the Hudson Fish and Game Club from 2 p.m. to 10 p.m.